Myasthenia Gravis

[Blue727]

In advance, I will apologize for the long post and rambling, but I wanted to layout everything in hopes of figuring this out. I am a 28 year old male.

I woke up one morning about 4 years ago and complained to my wife of left ear pain, dizziness and my eyes felt funny. Since this time it has went downhill. My right eye and basically the right side of my face feels smaller than my left, my eyes feel heavy almost all the time. The worst part for me is I can barely maintain eye contact anymore with people for some reason. When I go into a store and say I'm looking for a bag a chips, to look down the aisle it feels like my eyes don't track together or something. Turning around or looking left to right, makes me feel off balance, confused and dizzy. When I dim the lights in my house, I can barely make out the face of the person I'm talking to and during the day I often seen black spots in my right eye. My night vision is fading day by day. I have days where I feel like it's hard for me to even talk. I used to be so athletic and now after playing a softball game, I'm shaking so bad I can barely stand up. Somedays my arms are so shaky and my legs start to shake even when showering. When I'm trying to hold myself up, my upper arms and torso shake really bad as well. My legs will sometimes just start shaking uncontrollably and even twitch. Some people notice my right eye looks smaller than my left, but not all the time. The hard part is the fact that I feel like this all day everyday. I wake up in the morning with this feeling and it never subsides.

When I try to rest or sleep, I often feel almost paralyzed, I get really shaky, weak and I wake up panicky and somewhat breathless. In the mornings when I wake up, I'm litterally shaking, almost like a seizure By the end of the day, my eyes look really heavy and they actually hurt.

I have seen many, many doctors, a neurologist, MRI's, CT scans, Sleep Apnea tests and many more. The notable things I was told, is that I woke up almost every 3 minutes during the sleep apnea test and would immediately fall back into the deepest sleep possible. I had a surgery postponed twice, as once they put me under, my carbon dioxide levels rose so high they thought I would go into cardiac arrest. I had a homocysteine test that was elevated 35.0 higher than the normal person, yet I cannot get a diagnosis.

I have never been tested for MG and never had any scans of my thymus, thyroid, pituitary or anything.
Do you have to have double vision to have MG? Is it possible this could be because of MG even though people don't notice it? I have complained to everyone for at least 4 years that whatever is going on with my eyes actually affects the way I talk and everything.

Any suggestions, comments or ideas would be greatly appreciated, as this has almost destroyed my life.

[karandi]

Hi Blue 727 - I was diagnosed with MG in November 2003. I beleive this was caused by the sudden and unexpected death of my wife as I was in a state of shock for some weeks. I have had an attack (my phrase) of the symptoms every November since. This always begins with double vision followed by some kind of creeping paralasys down the left side of my face through my neck then onwards to my left arm and once to my chest muscles which caused partial respiratory failure when I was hospitalised for five days to have imunoglobin replacement. I was also hospitalised when the paralasys affected my facial muscels and I couldn't eat, talk or hold my head up. Otherwise the symptoms cleared up of their own accord.
My main difficulty is that my medical practitioners themselves have little knowledge of MG and often precribe medication which themselves have awful side effects especially as it worsens my diabetis and so have even more medication prescribed.
I am no medical expert but although your problem sounds like a neurological condition it doesn't sound like MG to me.
I myself identified that my "Attacks" coincided with my winter anti influenza vaccination which triggered the MG attacks ten days afterwards. So I did not have the vaccination last year and have been free of MG symptoms ever since.
So I belive my MG was caused by Stress and the attacks by anything that triggers a severe reaction in my immune system.
Hope this helps
Ken Robinson (U.K.)